Wednesday, September 14, 2011

Wordless Wednesday: UCP Walk Roll & Run

Last Saturday was our first Walk, Roll & Run event, which is an annual fundraiser (this year we raised $84,000!) for our local chapter of United Cerebral Palsy.

I'm sure this is typical of many first-time parents, but I found myself staring at everyone and trying to figure out if Malachi will have that gait when he walks or those extraneous hand movements or that type of wheelchair. I couldn't help myself.

What struck me as I looked around was what a huge and varied spectrum of disability cerebral palsy is. No two CP cases are alike and the differences in how it affects people seem so massive to me now. But I know before we started down this path, to me those people were all just "disabled." Period. Well, I probably made a distinction between "disabled but not badly enough or bizarrely enough or intellectually enough to bother me" and "the others," but that's about it. I never really made the distinction of "in a wheelchair but able to feed herself" or "using a walker but able to talk clearly." Now those distinctions seem so important.

So there I was, analyzing and contrasting and comparing everybody's movements. But you know what? Some people who I think are actually normal had pretty weird gaits, too, when you look closely.

How did I not notice that before?

Not the best picture I've ever taken, but considering the sun was shining on my camera phone and I could see nothing, it's not that bad. This is Malachi, who I was holding, and my brother-in-law who sported the Connor's Crew emblem of the team we were on.

5 comments:

I identify with this post so much. My son is 2 and I do the same thing, although not as often as my son gets older. There are so many unknowns, sometimes it is comforting for me to see the possibilities. Even though I know no two people with Cerebral Palsy are the same.

Hi, I am so glad I found this blog. I have been trying to read the post, as many as I can but the tears just flow. I am a grandma to a set of triplets two boys who are awesome and a little girl who's smile will melt hearts, to look at her you would never know that she can't walk or talk clear or run and play with her brothers. She has CP a brain bleed at nine days old that forever changed our lives. Their parents split up before they turned one. dad has joint custody and they live with us every other week. Mom does all the therapy with DHS because she does not want to pay the copays, she will not let us be involved as she gave "birth" to them, so her current therapy is a joke. Dad me and grandpa have had it and now are actively looking in to what we can do. I care for them as much as anyone in the family but I have no outlet for how I feel, how much of my life has been forever changed. I really did not mean this to be so long.DeAnna

Welcome and many happy returns. If you have any questions or are willing to listen to unsolicited advice, feel free to e-mail me by clicking on the envelope icon at the top right of the page next to my profile picture. You could also join our forum for caregivers of multiples with CP:http://www.outrageousfortune.net/p/formum-place-for-moms-and-dads-of.html

I wish you all the best. This road is not easy, but together we are stronger.

Books by Shasta Kearns Moore!

Prayers, thoughts, well-wishes, intentions, good vibes, whatever

Here are a few key things on our cosmic wishlist for Malachi's recovery. I don't care who you address your requests to, but I do believe you can help us right now by taking a moment to ask your divinity for these things:

» The patience and stamina to explore his body and what it can do.

» The ability to swallow food and liquids normally.

» Stability through his trunk, including strengthening the flexor muscles.